Special Moments

EDIT: Well I started this the week after the girls turned two (16th March), it’s now May….. I’ll do a few quick updates throughout the post marked with **

Writing this blog is definitely getting harder the older the girls get!

Wow! I have been on this journey since November 2015, that was when I had a very large bleed and was told my 9 week (gestation) babies would not have been able to survive.

Fast forward to March 2018 and I have two crazy 2 year olds, a 4 year old and a seven year old. So MANY miracles occurred for that to be possible.

It is only now that I am fully grasping that concept. It was predicted that one or both girls would die 4 times. Something or someone who believed in us and Ellie resulted in there never being a conversation surrounding withdrawing care (which had the potential to happen twice). It’s so easy to see now but so hard to fully comprehend. It all sinks in the most as to how sick Ellie was when we go and visit the doctors and nurses who were looking after her. She will laugh and play and run away (of all my four children the one that can’t hear me had to be the runner….. seriously!). They look at her and are amazed. I look back and have no idea how we did it, it was insane and if someone told me we would have to go through that again or if someone told me we would have to spend another year in hospital I’m not sure I would be confident I could do it.

We do not know what we are capable of until we are thrust into the situation.

Today the girls are happy, cheeky and driving their parents to insanity with their inability to sleep through the night or even coordinate their very rare sleep throughs.

Ellie potentially has a big year ahead, she is booked into have her tonsils and adenoids removed to try and improve her severe sleep aponea and grommets inserted to try and release the fluid in her ears so that her hearing aids can be set correctly. She just needs to hit 10kg before her scheduled surgery time. **Ellie is still 1.2kgs away from her 10kg goal, I’m thinking she is hindering herself by NEVER sitting still.

Hannah is hitting all her milestones and is pretty much caught up. She is talking and loves repeating people, she is signing, loves playing with her big brothers and basically thinks she is a 4 year old.

Ellie is saying dadadada which we are over the moon about, she also says quack. She is learning a few signs (she signs Dad as she says dadada) and it become proficient in signing finished! **Ellie now signs Mum as well! She says dadad as she signs it, but she signs both with context which is so exciting for us.

I find it hard to remember a time when Matt and I weren’t outnumbered 2-1. It is busy, chaotic, hard, exhausting, did I mention hard but I wouldn’t change it for the world.

Our appointments have settled down some what, we only seem to be heading to Randwick once a month. We have OT every 4 weeks or so, we see the paediatrician every 3 months. We are having sleep studies about every 3 months and see the respiratory consultant every 6-8 weeks. We are also having weekly early intervention at Waverly. So keeping busy but a little less than last year. ** We are actually having less and less appointments. We can go a few weeks with only early intervention, to be honest it’s left me at a bit of a loss after two years of dealing with huge numbers of appointments, doctors and allied health specialist.

Mild colds and snotty noses are still a major problem. Hannah is handling them quite well, Ellie is back on her oxygen, unable to eat as much, breaths very quickly and very hard requires very frequent ventolin and suctioning (which we can now do at home). It is basically 3 days to a week of monitoring, care and Matt and I getting VERY little sleep. I’m not particularly looking forward to this winter as she has already had two colds. It is very hard when the same virus is hardly even noticeable in our other kids.

BLESSING BAGS UPDATE

The blessing bags will be delivered next week, it was meant to be last month but we had 3 appointments (2 for Ellie, one for Hannah) in one day and it was too hard to fit it in. **These were finally delivered to my amazing Social worker Alison when Ellie had her sleep study in the school holidays.

Thank you so much for everyone who contributed, I was able to put together 27 bags and I’m so excited for those to be given to Mums who may be struggling while their child is stuck in hospital.

Special thanks to Aunty Julia and Uncle Doug, Mum, Nanny, Joan, Vanessa, Jen, Michael, Debbie and the amazing Church cleaning ladies, Anne, Michelle, Nanny, Kimbo and anyone else who is so appreciated but I may have forgotten.

One last thing the SMH Half-Marathon is coming up again soon. Matt and I were hoping to participate but it’s not really possible for us at the moment. However one of girls NICU doctors will be running, so if anyone would like to contribute to this amazing cause (Running for Premature Babies fund research and machines such as the NAVA machines that both the girls used). It really is a wonderful cause and a LOOOOOONG way to run.

Here is the link to sponsor: https://smh2018halfmarathon.everydayhero.com/au/tim-schindler

Until next year,

Deb and Matt

If you would like to catch some insights into our lives and enjoy an outlet I am trying, feel free to pop over over to myordinarylifebydeb.wordpress.com

Ellie in her cozy size 0 onies.

Matt’s birthday last week. No idea how people get all 4 of their kids to look.

Bows and Emma Wiggle are a BIG part of Hannah’s life at the moment.

She very happily put herself (and her tutu and lion) inside a tiny box.

Girls have their own dress code for train trips to appointments.

Hannah and her Emma bow.

Sleep studies mean Ellie gets biscuits for dinner.

Ellie helping me delivery the Blessing bags to Alison.

I promise she was happier and more excited than she looks in the photos!

School Holiday fun. Catching the train and ferry to Manly.

All four decided playing lego in the ball pit was the way to go.

Hannah and her birthday slippers. Both girls are very in to shoes, bags and all accessories.

Ellie wearing a necklace and bag. She screams if she can’t put them on herself.

It is amazing having our family together. Mother’s Day, birthdays I have never appreciated having all my kids together quite how I do now.

The last three to four weeks have been tough, the girls got colds and we were very excited when Ellie got through it at home. This was followed by Ellie getting two more teeth (they have 8 each now), this flowed into the girls and I getting a nastier virus.

This virus resulted in 4 doctors appointments and 1 hospital admission in 3 days. Ellie and I were back at Randwick for 4 days and that was plenty (she was able to stay on low flow just with a little more oxygen at times) – how do people spend longer in hospital?!?

We have been back home for two weeks now and she is doing amazingly well.

OK I’ll be honest, I wrote the above a week ago. I was finding it difficult to write – I’m not sure why. I think I wanted it to be special or make an impact and I could find the words. One year ago today we wrote a blog after not sleeping all night, after being told our youngest child was going to die. After messaging parents and siblings all night with any tiny update. In perspective of this it isn’t hard to write a blog with meaning.

One year ago the girls weighed 3.2kg and 1.8kgs, they currently weight just over 10 and about 7 (Ellie lost a bit when she was sick in hospital recently).

One year ago Ellie was unable to have anything orally (even via NG), we have only needed to use Ellie’s NG one in the last 3-4 days. It takes her a couple of goes to drink a bottle sometimes due to fatigue (I assume), any milk she is leaving in the bottle she is making up for in solids plus some.

One year ago I was terrified Hannah would be missing a part of herself and I knew we would never be able to fill that void. Now we have to stop Hannah pulling out Ellie’s hearing aides, ripping off her oxygen and then laughing and constantly sitting on her less mobile and significantly smaller sister.

One year ago Ellie’s ventilator settings had to be set so high in an attempt to keep her alive that it permanently scarred the outside lining of her lungs meaning every breath is like blowing up a balloon for the first time. (the scar tissue will never go away, but as she grows the new tissue will one day be larger than the scarred tissue – lungs can continue to grow until you are in your teens). Despite this Ellie is breathing without any oxygen support for up to 2-3 hours a day (longer if we forget to turn it back on) and we are working up to 4+ hours a day before our next respiratory appointment later this month.

One year ago there were questions around Ellie’s intelligence being compromised due to the extended time she was deprived of oxygen while sick, also a severe developmental delay. The amazing physio at Sutherland Hospital and fantastic early intervention speech therapist (hearing) are both astonished with her understanding, communication skills and intelligence (she can be quite cheeky). She is assertive if she doesn’t want to do something and has already pushed Hannah over a couple of times after she sat on her lap. She is starting to steal toys back off Hannah and knows what she is ready for! An example of this is me giving Hannah a peanut butter bread roll to eat and I turned away only to look back and seeing both of them then munching on bread roll. Her development is delayed especially compared to her sister who likes to stand up in random places (on pillows, on the lounge, over people’s leg and also on a flat hard surface – if there is nothing fun to stand up on. She is taking steps when people hold her hands. Ellie once again shocked her physio (I know health professionals seem to take a while to get onto the Ellie doesn’t fit the mould bandwagon) when she actually improved between appointments despite being sick and admitted into hospital. I’m told the biggest factor in her developmental delay is the fact she spend a year in hospital and a lot of that time in bed. She is getting stronger everyday, she goes backwards when she is on her belly, she can hold herself up when she is put into the all fours position. She has learn to transition from sitting to her tummy. She is standing when holding onto her activity table with only a small amount of assistance.

One year ago we didn’t know what the future held. Our current reality it lots of hugs for Mum, mess EVERYWHERE (Hannah enjoys empty shelves, drawers, boxes and then dragging everything around the house). It is busy and amazing just like I hoped it would be. I don’t recall hoping I wouldn’t get any sleep…… between the late and early feeds and the girls especially, the boys occasionally waking up through the night we are pretty tired (our long weekend includes indulgent sleep ins (for me – I have another cold) and much needed day naps for Matt who is incredible despite the chaos, the sleepless nights and working full time.

I think I have covered everything. Hospital feels like a really long time ago and I am looking forward to it feeling further and further away.

Something I forgot, we still have anywhere between 1-3 appointments a week, our record is 7 appointments in 5 days – we had to reschedule a few after Ellie’s hospital admission.

I’ve started reading a friends blog documenting some medical issues they are going through. I think I finally have some perspective of what it is like to wait and see and read what happens each day. It is strange being on the other side thinking of the things that weren’t mentioned or what is being written could possibly mean for them.

I will leave this here, for those that fully understand what it is like to be a warrior.

Thank you for being so supportive.

*Deb

Poppy ran another half marathon for us – who wants to run with Mum and Dad next May?? 7, 14 or 21km!

It is hard to believe that it has been 4 weeks since we brought Ellie home from the hospital! Life has been an absolute whirlwind since bringing her home.

Progress – Ellie is doing fantastically. She is drinking more and more milk on her own, her current record is 85mls (a whole feed is 165). She is breathing really well and even managed a whole night without oxygen in the first week (we forgot to turn it on!…she was rather tired though). She is probably the best sleeper of all of our kids over night. Her development has been fantastic since coming home. She sits up on her own without any difficulty and has started to become almost as ‘grabby’ as her sister. We have been told her ‘rocking’ is a sign she is keen to move, but she is still a way off crawling. Meanwhile, we are desperately trying to tell Hannah that she doesn’t need to start walking yet, but she has other ideas and is pulling herself up on everything possible.

Family Life – Life is a bit of a circus in our household. Twins, 2 older kids and Ellie’s medical requirements make an almost full time job for two parents, but we are starting to get a handle on the routine….just with very little sleep! Ellie absolutely adores being home. She smiles and giggles all the time and is so happy just to be here. She loves watching her brothers play and interacting with Hannah away from a hospital bed. Nate and Hannah have a sibling romance going on and can’t get enough of each other, and Levi has responded by deciding Ellie is his favourite and has become her best advocate (‘What about Ellie’ is a common phrase to come from his lips). It is absolutely beautiful having our little clan all together, but the moments to actually stop and reflect on this miracle are few and far between at the moment.

Challenges – On our first week home Hannah pulled out Ellie’s NG tube. We had looked away for all of 10 seconds and looked back to find both girls smiling and Hannah playing with the long yellow string that had magically come out of Ellie’s nose. Deb and I had to choose between going back to the hospital, or putting it back in ourselves (we were told not to do it until we had done 3 under supervision). We both felt fairly confident after seeing it done dozens of times in the hospital, and we decided to give it a go (we had also done it once each on our last day in hospital). Ellie was very brave and we managed to get it down without too much fuss, the biggest problem was trying to fend off Hannah at the same time who was balling her eyes out and trying her best to wrestle us and help her sister.

Where too from here? – Ellie is currently fighting off the family cold, but so far is doing well with it (we were told to expect a trip back to hospital, even for a simple cold). When that is sorted out they will look at slowly weaning her off the oxygen. We also need to get her oral feeds increased so she can one day lose her NG tube. There are no fixed dates on this, but so far the progress is pleasing. We also need to work hard to keep her physical and mental development moving along. Most weeks we have one or two appointments for her hearing, early intervention, physio, occupational therapy, paediatrician, feeding clinic, respiratory and sleep team.

While we don’t miss being at hospital and regularly blogging, we do dearly miss all our friends and supporters who helped us so much through the first year. You will never be forgotten and will always appreciate you and hopefully when life settles down we can do something with you other than ask for help!

*Matt
I’m in charge of adding the baby spam.

* Deb

Feeding time

I ❤️ being home!

Mummy let me sleep in the lounge room with her (we are quickly discovering what princesses our little girls are)

Ellie’s highchair came in a box!!

The girls beautiful hospital friend gave them one each of these phones, they are still fought over….

Swinging is SO fun, the hospital should get a swing for sure!

It wasn’t me…. 😬

We’re so funny!

#twinlife One sad in carrier, oxygen on my back and other twin in my arm. O yeah and one hand to take the photo! 😂

Yay! Someone learnt to bring food to her mouth!

Tired Mummy = girls in sleeping bags. Yes Hannah is standing up…. I think it was in the morning one day.

New tape trial. I look good in pink! 💕

And one from today’s outside time. Matts hand is on Hannah and Ellie still loves the swing.

Writing our last regular post is somewhat bitter sweet. It was a similar feeling when we left the hospital. We are were elated to be bringing Ellie home, but were sad to leave so many good friends and supporters. The people who read this blog have also been a great support to us. Your prayers, encouragement and cheering has been a real source of motivation that has kept us going throughout the last 12 months. Thank you.

Ellie has been doing really well and has handled the transition without any major dramas. Her two big medical challenges now are to consume enough food orally to not need an NG tube, and to breath without any oxygen support (She is booked in for a sleep study in July to trial this).

Tonight, Ellie came to the 6pm Church service with us. Bringing her to Mass had always been a moment that I had marked in my mind as the end of the hospital journey. Most of the highlights from the journey that I will take with me are from the resilience and miracles that Ellie continually showed us:

Making it to 26 weeks alive and kicking despite early predictions and complications in the pregnancy

Correcting the small hole in her heart by herself after the drug trial had to be stopped due to her first bout of sepsis.

Fighting off a triple sepsis infection that an adult would not survive (the night we were told she wouldn’t make it through).

Not having an oral aversion despite her very late bottle and food intake (quite rare)

Avoiding her tracheostomy by improving her breathing the day after we agreed to the surgery (our decision was made after multiple teams assessed Ellie). This was a very real prospect because they said she would not progress to low flow and would be on high oxygen support long term.

Thank you to everyone who has shared this journey with us, we will always tell Ellie and Hannah about the Village that rallied around and helped us raise them. – Matt

Ellie coming home is busy, but feels so normal. No fanfare or big happens, just a normal family together who have easily accepted that this is the way it was always meant to be. And wow it’s been a long time coming! I finished work in November 2015 due to pregnancy complications, coming off a miscarriage in August 2015 (Grace would have been due less than a month before the girls were born).

Que sera, sera

Whatever will be, will be

The future’s not ours to see

Que sera, sera

What will be, will be

Que Sera, Sera

I’m not sure I have a highlight as much as I know things will never be as they were (and not because we now have to extra kids). The six of us have been on a journey that has never been traveled before and will never be traveled again. It is unique and it is ours. We did not get through it alone.

What I hope to remember from the last, what feels like years, is the people, the community, the support. I want to remember the nurse who bath and fed Hannah while I was sleep deprived and terrified my baby was going to die. I want to remember my sisters coming to be by my side with less than a days notice because I messaged them and said I was scared to go to a meeting on my own. I want to remember the nurse who looked at me as I walked into the NICU, told me to leave Hannah and walk back out so I could have 20 minutes to myself. I want to remember the nurse who took Hannah when she woke at 530 so I could get an extra 30mins sleep after a bad night. I want to remember the nurses who told me to go and shower and take a quick walk while they bath both my girls. I want to remember the probably 100s of people who supplied 5 meals a week for us for 3 months straight, I want to remember the people who continued to provide meals for us over the last 9 months, I want to remember that my cousins came and helped us maintain our yard, I want to remember the people who gave us various gifts often when we needed them, I want to remember our families who endlessly took care of our boys and stayed with our girls when we couldn’t, I want to remember every little and huge thing our parents have done for us, I want to remember that 204 donations were made and that my sister was asked to talk about how to inspire people to donate, I want to remember that Roy has and is going to run 2 half marathons in honour of our girls (https://smh2017halfmarathon.everydayhero.com/au/roy-humphreys feel free to donate 😊), I want to remember all the friends I have made – with other patients and there families there is a bond that other people simply don’t understand, I want to remember the nurses I chatted to for hours on end, I want to remember the doctors who looked after, saved and cared for Ellie, I want to remember all the cards, emails and messages we received encouraging us to keep going, I want to remember how hard and scary and stressful it was, as well as how joyful, exciting and exhausting, I want to remember expressing 7 times a day and first hugs with my daughters, I want to remember not knowing if my baby was going to live or die and relaxing lunches at the pub laughing about NG tubes coming off.

What I needed was provided

I want to remember all of this and more because it has changed me, it has changed our family, it has changed our perspectives, it has made me angrier when people don’t do everything in their power to make sure their kid doesn’t end up in hospital, it has made me more sympathetic when you hear someone’s kid is sick, is has changed my perspective on what sick really is. It has made me more aware that although things made life easier they are just things, ultimately if your family is healthy and safe with food, any clothes and shelter nothing else matters. It has changed me.

Everyday for at least 7 months I have read the below quote, sometimes aggressively in Ellie’s favour, sometimes adding expletives to give it more attitude, sometimes in hope. I like tomthing of the fate character as being a bit of an over bearing bully and the warrior being controlled and strong standing up to this force and whispering, nothing more was needed. Ellie was known for doing the unexpected, people came prepared for Ellie to call the shots and change their plans. Ellie is my warrior and Hannah is her greatest advocate and motivator. Hannah is often over shadowed, however do not forget she fits into the under 28 weeks, under 1.5kg category. Babies in this category require additional hearing and vision tests, qualify for physio, speech therapy and OT – babies in this category do not normally look and act like Hannah. No way was being born small and early going to hold her back!

One last, and possibly insignificant thing to many, thing is I don’t want to forget the quotes that pulled me through and the songs that lifted me up.

*Deb

Where it all began…. crazy that this was only 7 weeks and 2 days before they were born.

Well in all the excitement yesterday we forgot to tell you all about something (almost) as equally exciting……

There were 204 blood donations made in the girls names in the last 12 months!!

Thank you to my incredible sister Helen and all those amazing people who donated!

A year of blogging wow! Some gift our family received were a heart like the one above with the most common blog words in it, I’m very fortunate to not have the word crappy in it – turns out I use that a lot, oops. Louise (another amazing sister, I have 3 of them!) made a video of photos from the time they were born until recently. It is really incredible, I sometimes forget how small they were and how sick Ellie really was. I will add them here and y’all really just want to see pics of Ellie at home anyway so I will add those also.

She is doing well, the move is a big adjustment, so she is needing a little more attention than usual (this is our home, but she doesn’t realise it is hers yet). Otherwise all is looking well. Thanks for all the comments

Today was always going to be a big day. Having all six of the Humphreys family in the hospital is never a small task. The boys were very excited to visit the starlight room, play in the toy room, and give out cupcakes for the girls birthday.

Needless to say, Hannah and Ellie received a huge amount of attention for their birthday. Some highlights included:

A present and personal serenading from three starlight captains

A fully catered party with a dozen nurses (organised by the nurses)

Visits from many of the doctors, nurses, midwifes and other professionals who have worked with the girls over the last 12 months.

That was a big enough day in itself, but something else also happened today……….

A blurry family photo at the end of a very big day.

Nate was most excited when we told him Ellie was coming home today, mostly because he had predicted that her birthday would be a good time to come home (I think we have a little prophet on our hands).

We are too utterly exhausted to fill in the details, but we are elated to finally have our girl home. All six Humphreys will be sleeping at Waterfall for the first time ever. The girl that wasn’t meant to make it out of the womb has left the hospital to start her life at home with her family.

Welcome home Ellie, we love you and are already better people for having you in our lives.

Love Mum and Dad

p.s. It is going to take us a while to settle in at home, and we know how popular Ellie is, but we ask that her fans give her a little time before any unexpected visits. We are requesting no visitors to start with, so Ellie can have time to assimilate and get use to the big world outside of hospital.

When she is up to visits, it would be really helpful to message Deb before you come. We are really looking forward to celebrating the year ahead, with all the people who have stuck so closely by us over the last 12 months.

With only 8 days (or really 7 because it’s late now) until the girls birthday we have a few things going on!

1. We currently have 193 donations! If you are thinking you should donate again or for the first time, what a great week to do it!! Remember to sign up to Red25 group Hannah Rose & Ellie Grace. Thanks! Especially for the 193 donations that have already taken place.

2. If you have or would like to write a letter the girls girls for there future birthday and are not sure how to get it to us, please email me and I will pass on our details (mattdebnate@gmail.com).

3. Does anyone remember the girls Poppy, Roy, running the half marathon last year to help raise money for the NICU? Well on the 21st of May (3 days before his, very young 71st birthday) Roy will once again be running 21kms to help raise such valuable funds for research and equipment at the NICU. If you feel inclined you can sponsor him at this address https://smh2017halfmarathon.everydayhero.com/au/roy-humphreys

Well today was a much grumpier day, between teething and immunisations (but it was nice having the girls each fall asleep in my arms (at different sleep times). The girls are quite funny they can be incredibly irritable and upset, but also reasonably easily distracted (as long as they aren’t overtired) so although today wasn’t great it was still full of smiles and fun. On that note these grumpy immunisation days are nothing compared to getting the things they are being immunised against. For some unknown reason one the girls friends failed to produce antibodies for one immunisation, she caught what they thought she was immunised against, spend 5 very hard weeks in CICU, a further 7 weeks on the ward and now has a minimum of one follow up appointment a week. It isn’t fair that she was immunised and it didn’t work. But even before seeing this I was a believer in immunisations but after seeing it I’m not sure how anyone could say no to them. No one should have to see their kid in the CICU.

On an exciting note Hannah finally showed me how she can crawl! (Everytime I left the room on the weekend she would crawl to the boys), not only that but I managed to film it! I also got Ellie’s lastest physio trick!

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I also wanted to touch on generosity tonight. Sometimes I feel I’m not grateful enough and definitely not worthy or the generosity given to us, or the girls who are very worthy (in the opinion of their unbiased Mum 😂😂). The extra time the nurses give to us, the thoughtful gift a NICU friend delivered (while their son was in surgery) and something else extraordinary. There has been another patient on C1South that have come and gone a few times and have now been staying for a while with their older daughter. The Mum is truly beautiful. She overheard part of a conversation about the girls needing blood donations. Well she volunteered to a nurse that she would love to give the girls blood if they really needed it and was willing to see a doctor immediately to have it taken. Another family with a sick kid and their thoughts were on how they could help my babies, the generosity of that act I feel is something I should aspire too. A side note, it was explained that the girls were trying to inspire blood donations and no longer needed them themselves.

Thanks for reading!

*Deb x
Twinning!

Oops….. guess that’s what you get when your Mum and her friend take you to the pub for a sneaky lunch(also we did save the NG, she didn’t need a new one).